Social

Month: March 2018

To commemorate the 3rd anniversary of the SocialEyes vision impaired group of Barking and Dagenham, Ray spoke to one of the members, Janet Payne about what her experience has been like since joining the group.

How did you find out about SocialEyes?

“I came across East London Vision at an event and they were promoting activities run by local societies. I signed up to receive information from them and that’s how I found out about SocialEyes. I joined the group back in 2015 when it was in its baby stages”

Could you tell me a bit about your role at SocialEyes?

“When I first joined SocialEyes, Bhavini was still running it. It wasn’t a big group so all the members would help out here and there. When Bhavini got a job at East London Vision they were looking for someone to take on some of the responsibility, and since I wasn’t working at the time I took the opportunity. However, I don’t lead it on my own – me and Bhavini work together. I find out information and contact people for the meetings and Bhavini contacts speakers and carries out risk assessments for activities, so it’s really a joint effort between me and Bhavini. I can’t take all the credit.”

Do you have any memorable moments in SocialEyes, like an outing or trip, or any members that are memorable?

“Ernie is a memorable character. He is an older gentleman with sight loss and hearing loss and he is just a real bundle of fun and a joker to the tea. For example, when we’re at the meetings and I ask him what he would like as a drink and he will say ‘can I have a gin and tonic’. He’s a real joker and he’s always up for having a go at things. One of the outings we did was go to the Queen’s Theatre in Hornchurch and that was really good fun because we had a behind the scenes look and a touch tour. They were showing some of the props, and there was a string of onions because one of the characters was French, and I was holding it when someone said ‘let’s take a picture’ so I ended up in the photo with the string of onions around my neck. It was really funny.”

What does SocialEyes mean to you and the members?

“To me it’s an opportunity to meet new people and get involved in new things I might not do otherwise, and for the members it’s one of the few things they do socially. Information is good, but for a lot of people it’s the social interaction that they benefit from because a lot of it is getting to know other people, how they manage their sight loss and also building up friendships. That’s the main thing.”

Photo of Bhavini (left) and Janet (right) standing in front of a glass window with an East London Vision poster.

Last week (11th-17th March) marked World Glaucoma Week, an international effort aimed at raising awareness of the disease and encouraging everyone, especially those who are most at risk, to get regular eye tests.

Glaucoma is the name given to a group of eye diseases that affect the optic nerve, and it can cause the patient to lose their sight completely if it remains untreated. It is estimated that glaucoma has claimed the sight of 4.5 million people globally, and that this figure is due to rise to 11.2 million by 2020.

Most people with glaucoma are unlikely to realise they have the disease until it is at its advanced stages. There is currently no cure for glaucoma and any sight loss that occurs as a result of the condition is irreversible. However, treatment for the disease does exist, and once the patient has been diagnosed it is possible for them to take action to limit their sight loss. This is why regular eye checks with an eye-care professional are vital so that the disease is caught in the early stages and treatment can begin as soon as possible.

There are various risk factors that make a person more likely to experience glaucoma, including advanced age, black African or Caribbean ancestry, and a family history of the disease. This year, World Glaucoma Week was focusing specifically on targeting people who are first-degree relatives (parents, children or siblings) of people with glaucoma to encourage them to get their eyes tested regularly. First-degree relatives have a ten-fold increase in life-long glaucoma risk, so it is extremely important that those who know they have a close relative with the disease get their eyes checked, and it is also important for people with glaucoma to inform their relatives, where they are comfortable doing so, and to encourage them to have their eyes tested.

World Glaucoma Week has been promoting this issue across the globe, with public talks, radio shows, social media campaigns and much more in countries from Brazil to Nigeria to Indonesia. Closer to home, Specsavers trained over 2,000 staff about glaucoma in advance of World Glaucoma Week, and the International Glaucoma Association worked with Vision Express to raise awareness of the condition through supporting the Vision Van which toured the UK. The NHS also produced a free glaucoma guide with information about the condition and tips suggesting how people with glaucoma can manage it. The guide can be found here: https://www.nrshealthcare.co.uk/wordpress/wp-content/uploads/2017/03/NRS-Glaucoma-Guide-FINAL.pdf.

For more information about glaucoma and to see what else went on during World Glaucoma Week, you can access their website here: https://www.wgweek.net/.

Growing up I enjoyed looking after my younger siblings and cousins, so I knew I wanted children of my own one day. However, when I was 17 years old I was diagnosed with retinitis pigmentosa and told that I would lose my sight in the matter of weeks, months or years.

I stopped dreaming about having my own family again until I met my future husband at the age of 21. Soon after I got married I was blessed with my first beautiful daughter. This was also when I noticed that my eyesight was deteriorating for the first time since my RP diagnosis. Because of this, I became a very hands-on mother. I needed to feel things as I couldn’t rely on my eyes to see. Moreover, when my daughter started to walk I had to find ways to be able to locate her. I’d dress her in brightly coloured clothes and shoes that squeaked.

Four years later I was blessed once more with my second beautiful daughter, and unfortunately found that my sight was deteriorating further. My eldest daughter was a big help in being my eyes. For example, she would read to her baby sister, which was something I could no longer do. Being a VI mum of two girls was challenging at first, but I taught my daughters to be aware of my sight loss, and they have good knowledge of my eye conditions and mobility aids like the white cane. I feel confident to rely on my daughters to guide me and give me verbal cues when I’m out in public or at home. I’m very proud of them both.

Finally, I’d like to say to all VI mum out there that you are doing an incredible job. Keep on being the great mum that you are! If you’re vision impaired and thinking about starting a family with your partner it’s natural to have lots of questions. A genetics counsellor would be your first point of call if you’re worried about passing on your condition. I would also speak to other visually impaired parents. There are plenty of blind parent’s forums online to ask questions and seek advice and information.

What can I say? Being a mum is an amazing experience and I love being a mum to both my wonderful and perfect daughters.

Image of Bhavini in a bright red dress with her two daughters.

Listen to my latest podcast about my journey into becoming a mum and living with a visual impairment. I reveal how I overcame some of the unique challenges I faced as a blind mum, such as learning to bottle feed and dealing with my daughter’s tantrums.

The Beast from the East certainly had us all on weather watch throughout last week. However, Saturday (3rd March) arrived and the snow melted away and you wouldn’t have even known we’d had any of the white stuff in London! With the weather looking more promising it was confirmed that the very first Vitality Big Half Marathon would go ahead on Sunday 4th March.

Photo of a snowman wearing a hat and scarf made by Masuma Ali during the week The Beast of the East brought snow chaos to the UK.

Wrapped up in my many layers I joined Team ELVis at our spectator spot by Bermondsey Station, which was mile 8 for the runners, to cheer on our amazing Big Half runner Joanna Lally. Over 11,000 runners lined up by Tower Bridge for the start of the race and finished at the iconic Cutty Sark in Greenwich.

We had the honour of seeing the four-time British Olympic champion Sir Mo Farah run past us before streams of other runners started to arrive. It was fantastic seeing Joanna at mile 8, who was in very good spirits. She has done an excellent job in raising over £600 for us to be able to continue running more technology group sessions to blind and partially sighted people. There is still time to donate and help Joanna to reach her target of £1000. You can donate on https://mydonate.bt.com/fundraisers/joannalally1.

We arrived at Greenwich Park to meet our runner Joanna as well as Jessica Beal who ran for South East London Vision, our sister charity covering the 6 boroughs south of the River Thames. Greenwich Park was a burst of energy with the Big Festival in full swing with live music and plenty of food stalls. Both Jessica and Joanna were thrilled at their achievements and rightly so as it was both their first half marathon. Joanna finished in 2 hours, 26 minutes and 30 seconds and Jessica in 2 hours, 24 minutes and 56 seconds.

Many congratulations to both ladies, you’ve done yourself and all of us proud!

Photo of Joanna Lally smiling and holding up her Big Half Marathon medal.

Here’s another recipe I’d like to share with you. I hope you enjoy making these fairy cakes because I always have such fun making them with my nieces and nephews, and I must say there is always words about who is going to lick the spoons!